Tuesday, April 21, 2009

Cassandra's Novelty Shop

FAAAS is a group that disseminates false and harmful information about autism and autistic people. Please sign this petition requesting that Dr. Tony Attwood and Dr. Isabelle Hénault disassociate themselves from this disgraceful group. Learn more about FAAAS and the Cassandra Affective Deprivation Disorder invented by Maxine Aston here,here and here.

Larry, let's not give these people anything to point to in order to imply we're violent. We're not. We're going to take down FAAAS and ASPIA and the other Cassandra supporters by sending a clear message that if you support these groups, the power of the Autistic community will work to educate the public about your poor choice of affiliations. The autism community is a source of tremendous income and reputation for some people - and if those people are doing good work, there is nothing wrong with that - but as we organize across the globe, it will become rapidly apparent that those who side with groups that spread hatred and bigotry about us risk their professional reputations when they do so.

Thanks Bev for creating another one of your clever and hilarious posters. However, the application of demeaning stereotypes to autistic people is definitely not funny.

Up until 2 days ago, I didn't know anything about 'Cassandra disorder' or that this is the main theme of Maxine Aston's books. I even looked it up on her website. Seems that CADD, the syndrome 'suffered' mainly by female partners of Autistic men, causes PMS, headaches, mood swings, depression and even cancer. As if nothing else could possibly cause these!!

We are just as entitled to be involved in relationships and to raise children, without fear of prejudice or stereotype.

I'm appalled that reputable experts like Tony Attwood, would support people who promote this pseudoscience. I first started reading his books when I was 13. I always believed he was one of the 'good guys', when it came to Autism. Clearly, I was wrong.

Affective Deprivation Disorder (AfDD) is a term proposed by couples therapist Maxine Aston[1] for a relational disorder in which at least one member of the relationship has low emotional intelligence or alexithymia [2] which latter may contribute to the emergence of an enduring emotional deprivation as experienced by one or both partners of the relationship. As a disordered relationship, AfDD does not result solely from alexithymic pathology in one individual, but rather includes pathological patterns of responding by both individuals i.e. alexithymia is just one mediating factor to which pathological responses of both individuals are joined at a dysfunctional juncture. The interpersonal relationships of those with low-EI or alexithymia are frequently hampered by poor emotional communication. According to Vanheule, Desmet and Meganck (2006)[3] alexithymia creates interpersonal problems largely because these individuals avoid emotionally close social relationships, or that if they do form relationships with others they tend to position themselves as either dependent or impersonal, “such that the relationship remains superficial.”[4] Inadequate differentiation between self and other by alexithymic individuals has also been observed by Blaustein & Tuber (1998) and Taylor et al., (1997).[6] In a recent study[7] a large group of alexithymic individuals completed the 64-item Inventory of Interpersonal problems (IIP-64) which found that "two interpersonal problems are significantly and stably related to alexithymia: cold/distant and non-assertive social functioning.”[8] Chaotic interpersonal relations have also been observed by Sifneos[5] In addition to these interpersonal problems it has been found that low-EI may be a contributing factor in situations of domestic abuse[9] and that both low-EI and alexithymia affects both the quality and satisfaction of the relationship, and produces negative psychological symptoms in one or both individuals.[10][11]

There are several benefits to employing the category of relational disorder in this case. Firstly it shifts the focus somewhat away from the low-EI/alexithymic person’s pathology and onto the relational difficulties, meaning there will be less focus on blame and an invitation for the involved individuals to develop skills for recognizing and managing these difficulties together. Secondly, it steers away from the erroneous and damaging suggestion that alexithymic persons create personality disorder in their partners or children and instead shows that the disordered behavior is a response by either individual to the problematic relationship dynamic.

Older terms proposed for the disorder were Cassandra Phenomenon (2000)[12], Cassandra Syndrome, Cassandra Affective Disorder, Cassandra Affective Deprivation Disorder, and most recently Affective Deprivation Disorder proposed by Maxine Aston (2007).[13] These terms have been applied at different times, by various authors, to the experience of individuals in a relationship influenced by Asperger’s Syndrome, many of whom showed disturbing physical and psychological reactions to the lack of emotional reciprocity they were experiencing in their relationship. Maxine Aston was later to broaden her definition of the scope of AfDD’s applicability to include disorders such as depression, eating disorders, posttraumatic stress disorder, and panic disorder[14] in which the same low emotional intelligence or alexithymia found in Asperger’s Syndrome was also found to have high prevalence in these disorders. Alexithymia is thought to affect 10% of the overall population[15] and has a representative prevalence of 85% in autistic spectrum disorders, [16] 40% in posttraumatic stress disorder,[17] 63% in anorexia nervosa and 56% in bulimia, [18] 45% in major depressive disorder,[19] 34% in panic disorder, [20] and 50% in substance abusers [21]. Alexithymia is further linked with schizotypal, dependent, avoidant, and borderline personality disorders, as well as psychosomatic disorders such as migraine headaches, lower back pain, irritable bowel syndrome, asthma, nausea, allergy, hypertension or fibromyalgia [22].Description

Low emotional intelligence or alexithymia has been linked with deficts in the ability to be empathetically attuned to others.[23] Also, this lack of empathetic attunement contributes to a de-sophistication of emotional interaction in which many of the subtle emotional signals and nuances are not perceived by the sufferer,[24] a situation which may lead the non-alexithymic partner or family member to feel misunderstood, neglected or deprived when relating emotionally. A second issue related to alexithymia involves the inability to identify and therewith modulate strong emotions such as sadness or anger, which leaves the alexithymic individual prone to “sudden affective outbursts such as crying or rage”[25]

Low emotional intelligence or alexithymia has been recognized by clinical research as reducing marital satisfaction[26], increasing the risk of domestic abuse between couples[27], and reducing the emotional quality of a relationship[28], although it is possible in the latter example for a partner with higher emotional intelligence to qualitatively compensate for a partner with low emotional intelligence.

These salient features each contribute to the construct of Affective Deprivation Disorder, which is comprised of the following four factors; (a) Low emotional/empathy quotient or alexithymia; (b) Negative relational interaction and experience; (c) Negative psychological symptoms; and (c) negative psychosomatic symptoms.Diagnostic Criteria

To qualify for a diagnosis of AfDD one or more of the following indicators in each category must be present:

At least one partner must meet diagnostic criteria for one or more of the following

The closely related term “Emotional Deprivation Disorder” is an informal concept referring to a more enduring emotional deprivation whose etiology is different to that of AfDD. Although the two concepts have some similarities of behaviour, a differential diagnosis is made on the following criteria: Emotional Deprivation Disorder (EDD) is an enduring disorder of the self stemming from deprivation during childhood development, and is differentiated from the relational disorder proposed by AfDD in which the individual’s behaviours are reliant on the dynamics of a current relationship. These two distinct disorders may sometimes be co-present, as when someone with EDD habitually seeks out emotionally depriving relationships in adulthood, which lead to a further embedding of the entrenched deprivation experience. The best way to distinguish EDD and AfDD is think in terms of the permanence or transiency of the emotionally-deprived condition. EDD is a primary and enduring condition which seems to alter little over time or with changing circumstances. Whereas AfDD is a secondary relational condition which disappears after the evoking stressful situation has been altered. The secondary deprivation of AfDD is much more likely to be responsive to treatment intervention than EDD.

It doesn't seem unreasonable to me that having a partner with AS, especially unrecognised AS, could lead to difficulties.

I think I may have AS, and I am convinced my father did, and he was unable to relate to me in the way a child needs. He did not percieve emotional needs unless they were explicitly spelt out. He was very literal. His AS was damaging to me.

I believe I may have AS, and it is a worry to me that if I were to have a NT child, I may not be able to provide it with what it would need.

Anonfornow, I'm confident that if you have a child and love that child, you and the child will get to know each other simultaneously and understand each other just fine. The fact that a parent is different from his or her child doesn't mean the parent is damaging the child. You and your kid don't have to be exactly alike to bond and learn from each other. Same goes for spouses and long-term partners.

One cannot invent a disorder based on one's own observations, even if it "doesn't seem unreasonable." One needs to employ a certain set of scientific applications rather than make stuff up on the fly.

I've got ten minutes to kill; let's see what example I can come up with:

Let’s say that . . . somebody has a pet rabbit, but forgets to feed it, and it dies. And the person is sad about it and just doesn’t understand what that rabbit’s problem was. What can we diagnose her with? Something that sounds scientific and woo-tastic . . . how about . . .

Lapine Dispossession Disorder?

Yes, that sounds good.

Lapine Dispossession Disorder is a condition that occurs in individuals—male or female—who are faced with the sudden loss of a companion rabbit due to a lack of sustenance provided. Just as many individuals suffer from depression or ill health during the winter months as a result of Seasonal Affective Disorder, Lapine Dispossession Disorder is similar in that its symptoms are brought about by lack of a lapine companion to starve. The sufferer’s symptoms are very real and should not be taken lightly. With attentive counseling over several years (at the rate of $160/hour), it is possible for the sufferer to make a full recovery.

Hey, that’s not bad. In fact, it sounds more legit than the bullcrap Aston came up with. Maybe I should add more exclamation points. Let’s go on:

Symptoms may include:

-- feelings of sadness or loneliness-- fondness for touching or “petting” soft objects—blankets, plush toys, etc.-- desire to purchase additional rabbits and fail to feed them-- a sense that life is unfair-- confusion about rabbit nutrition-- intense interest in looking at photographs of rabbits-- jealousy or resentment of other individuals who have healthy, well-fed rabbits who are still alive; “lashing out” for no apparent reason-- disinterest in activities formerly enjoyed by the sufferer-- fatigue, muscle aches, dizziness upon standing-- general feeling of "poor, poor pitiful me"

Now, let’s say that I, as a “therapist” (and, by the way, I have more credentials than Ms. Aston), have diagnosed my client with this disorder. And during our “counseling” sessions I convince the client that somehow it’s the rabbit’s fault.

And then I make a website (hmmmm, multicolored Comic Sans should do it, and ooo, I'll put my picture on the site -- maybe me in a big white lab coat? Yes, that'll make me look very clinical indeed) and advertise it to everyone who doesn’t bother feeding their rabbits.

I'm not trying to trivialize folks' relationship problems, but seriously. It really does take two.

Yes, Aspies can send off different signals than non-Aspies, and express love in different ways, and can also be total assholes sometimes. But *everybody* expresses love in different ways, and *everybody* can be a total asshole sometimes. When you marry somebody it's supposed to be because you like their particular set of ways, and because you think they are not a total asshole all the time. If you try to convince yourself that you married somebody *in spite of* their particular set of ways, and believe that the only reason you're having problems is because your spouse was *born* a total asshole (and your spouse is always the one who is the asshole because you are genetically incapable of being an asshole), you doom your marriage to failure.

Also, everybody has certain *needs* that become apparent over the course of a marriage. As in, my husband needs me to put his keys in a certain place if he is not to lose them. Or as in, I need him to make the bed if . . . well, if he wants it made, ever. ;)

I realize these are rather minor examples, but the major ones (which aren't anybody's business) work in much the same way. These things may or may not have to do with our Aspie status -- but we learned to recognize these needs in each other, and now we know how that part of the relationship works. Rather than say that having to strategically place keys or make the bed "damages" us, we simply do these things because we friggin' love each other.

evonne - "One cannot invent a disorder based on one's own observations, even if it "doesn't seem unreasonable." One needs to employ a certain set of scientific applications rather than make stuff up on the fly."Oh yeah, I fully accept that it has to be done scientifically.

Choosing to marry someone with AS is one thing, but obviously no-one can choose their parents. I don't think a child is equipped to understand a parent's AS ways, especially if no-one involved knows about AS. If I requested reassurance, my father could only ofter factual information about the likelihood of future events, but I needed emotional reassurance. I think he had difficulty comprehending that I did not know and could not do all the things that he knew and could do. I could not run to him for a hug. I think he frequently suffered from sensory overload leading him to withdraw, which I felt as rejection and lack of interest. He never described it as sensory overload as such, but I experience it myself and react in a very similar way. There is only so much unpredictable socialising and noise that I can bear. Very little eye contact from him, but that one didn't bother me at all, although I know it bothered others.

He did love me, but he didn't know how to love me. I am afraid with a child of my own I would be the same way. I would make great efforts not to be, but that might not be enough. (There is no great rush for an answer, as I have little ability to flirt and unfortunately do not come from a culture that favours arranged marriages, so no child anytime soon!)

"I think he frequently suffered from sensory overload leading him to withdraw, which I felt as rejection and lack of interest. He never described it as sensory overload as such, but I experience it myself and react in a very similar way. There is only so much unpredictable socialising and noise that I can bear. Very little eye contact from him, but that one didn't bother me at all, although I know it bothered others."

This I understand completely. And in fact I've been the one who spontaneously withdraws myself, and when you layer sensory overload reactions on top of perceptions of rejection *simultaneously* and in quick succession in two people who experience both quite frequently, it can be quite . . . interesting.

Yet, somehow, you managed to learn why your father behaved the way he did. And you know that he loved you. If you in turn have a child, and you employ what you have learned, I assure you it will be enough. If the kid is going to turn out to be a jerk, it won't be because of the shape of your brain.

There are many, many, many people who have fathers (and mothers) who they perceive as lacking the means to show affection, AS or not. Children learn. They learn what their parents are like, and what makes them tick. They get by. They grow up. They become their own people, either because of or in spite of their parents, and no one can really say what experiences and perceptions contribute to one's adult personality. They all do in some way, I suppose. And I suspect that it is not the "big things" that shape us most, but a combination of tiny tiny nuances that we may not even remember. I'm awfully suspicious when I hear folks say things like "X happened to me as a kid, so now I am Y" when it comes to psychological traits. To me that sounds like pop psych, and does a great disservice to the intricacies of the human brain.

Every once in a while, you come across a kid whose parents have obviously, royally screwed them up. That happens. But what occurs most often is that people grow up and understand what their parents were trying to do.

Everyone -- and I mean everyone -- has stories of times when they think their parents did something really awful. But often "damage" occurs only when people find themselves unhappy in their own situation, ignore their own behavior and the consequences thereof, and find someone else to blame.

And (I swear I'll shut up eventually) when people experiencing general ennui go Googling for symptoms like headache and fatigue and find that, lo and behold, there's a disorder for this and it's my husband's fault -- or when people who are just fine, people who have their share of family "issues" (which *is* normal, by the way; I guarantee if we could select a family at random and peer into their private lives they would seem pathological as hell), AS or not, are told by Oprah or whoever that, no, this is actually a *disease* caused by your mother's lefthandedness or whatever, and it's got a Latin-sounding name made up by some "professional", and folks take the "disease" seriously, it can destroy a family.

I'm sorry to drag out this discussion off-topic with my personal issues, I'll try to keep it short.

I wrote "I think he had difficulty comprehending that I did not know and could not do all the things that he knew and could do." This led to unrealistic expectations about my abilities on his part, and of course I fell short. This was not good for my valuation of myself.

evonne - I wrote that I know that he loved me, but he did not know how to love me. I mean that, intellectually, with my head, I know he loved me in his way, but with my heart I did not feel it, in my heart I feel rejected.

I only found out about Aspergers a few months ago, and it has made a great deal of sense of my father's behaviour. He was always a puzzle because I knew he was honest and without malice, and yet he could say and do such hurtful things, seemingly unaware that they were hurtful. It didn't add up, and now it does.

And I can see it in myself too, but in a slightly different way, partly because I am female, but I guess mostly because we are all individuals, right?

"when you layer sensory overload reactions on top of perceptions of rejection *simultaneously* and in quick succession in two people who experience both quite frequently, it can be quite . . . interesting."I would like to know more about this.

I wonder if he ever feels rejected by me, by my inability to listen to too much? He is happier than me to have a one-to-one conversation, but even that can be too much for me. I want him to stop talking and write it down!

Thank you for the reassurance. I hope it will be enough should it ever happen. Certainly if it is ever going to happen I will research all I can about the best way to proceed, and I do agree that nurture can only do so much anyway.

Sorry for the delay, Anon—I’ve been away from the computer and it’s taken a little while to configure a response. This is a little more personal than I intended to get here, but I suppose an explanation might be helpful.

Re: “sensory overload reactions on top of perceptions of rejection” and so on, I guess the best example I can give is this. Let’s say I reach over and touch my husband when he’s not expecting it. All in one big muddled moment, these things happen:

He is startled, and jumps dramatically. I feel that little sting of rejection (even though in my logical brain I know I do EXACTLY the same thing just as often if he touches me suddenly). Just when I’m reminding myself that he doesn’t mean it personally, he says something like “Why did you do that?!”. Because I was just trying to make the effort to be loving and understanding, and he seems to not have noticed, him "yelling at me" kindles my sting of rejection into a twinge of resentment. I say, “SORRY, I was just trying to show you LOVE,” or some similar huffy thing. He takes that (rightly, I suppose) as an insult to his understanding of how love is shown. He says, “SORRY I’m so WEIRD.” I take that as an implication that I am somehow insensitive and hostile to “weirdness”, which I maintain I most certainly am not! Quite the contrary, I insist, and he should know better! Then ensue further exchanges suggesting that each is intolerant of the other, etc., until we wear ourselves out. (Note, again, that EXACTLY the same exchange takes place, with equal frequency, with our roles reversed.) In short, we’re drama queens on overload.

The situation applies with me and my husband, but also friends, too, with different levels of physical and emotional intimacy, of course. I don’t think it’s really that different, obvious social roles aside, whether it’s an “inherited” family member or not. You can’t “pick” your father like you can your spouse and friends, but once you’ve *got* your spouse and your friends they’re not so easily gotten rid of either. ;) They’re people you have to live with, sometimes in very close quarters.

My mother, who is very obviously not neurologically typical, doesn’t really fit the “mechanical/unemotional/Aspie” stereotype at all; she is very loving and affectionate (hugs, kisses, diminutive nicknames)—but she might very well leave a kettle in flames in the kitchen. She spent time in institutions. It was hard on the family. But now that I’m grown I recognize that a lot of the “issues” we had when I was a kid and a young adult were quite frankly overdramatized.

My mom’s “symptoms” apparently didn’t appear until she was in her early twenties—my parents married young and wasted no time having kids—so her odd behaviors were seen as something sudden and pathological by my father and others who knew her before then. (With a little investigation, though, it seems to me that subtle clues were always there, in her and in several other members of her family. Maybe she just reached a point where she was unable to “fake normal” anymore. I often wonder whether I myself will reach this point, or whether all the overcompensating I’ve learned to do is so ingrained in me that it’s part of my “real” personality now.)

I was a kid with unusually high levels of angst and gloominess, and I saw myself as very “different” from my peers, and when I would act like a jackass and alienate everyone, I’d afterward find myself looking for explanations—and I decided it must be the result of having a difficult family life. (Thinking back, I really should have made the connection earlier. Now when I act like a jackass and alienate everyone, I can blame disability prejudice. :P)

Btw, we were also pretty poor—not tragic poor, but poor enough that it could be made tragic with a little imagination. My dad made sure we always ate the best food, but we didn’t get much in the way of clothes and extracurricular stuff. My dad was also a pretty overworked guy with a very short fuse, and most of the kids I went to school with saw I wasn’t allowed to do certain things—things that, mind you, there’s no way in hell I’d let my kid do either—and they proclaimed him horrendously strict and tyrannical, and I of course agreed. I decided that my family life must be infinitesimally more difficult than anybody else’s, because how else could I be so much more sad and awkward and angry and special than everyone else? And I decided that the family must be so sad and angry all the time because there was something “wrong” with my mother.

Now I understand, though. It wasn’t *having her as a mother* that was hard; it was seeing something “wrong” with her that made things so miserable. My whole family wasted a whole lot of energy going “Oh, woe is us; will she be this way forever?!” and “Oh, woe is us; Dad has to cook dinner and the children will never really get to be children!” Now we still have to do the same stuff for my mom that we had to do back then, and she still has the same notions and interests that many view as “childish”, but now it’s not some horrible tragic phantom looming over us; now it’s just . . . Mom.

Everybody in a family unit/relationship, AS or not, has certain “requirements” for getting along harmoniously and makes certain demands that are perhaps counterintuitive to the comfort level of their loved ones. There’s nothing that proves the demands of interacting with an autistic person are more difficult than with a non-autistic person. They just take a different mindset to adjust to—one that doesn’t always fit the mainstream. Sometimes adjusting requires more effort, sometimes less. Some mothers have big extravagant dreams of you fulfilling their Prom Queen Fantasies and throw tantrums if you don’t turn out just so. My mom is thrilled if you take her to the dollar store and let her rummage through the marbles. ;)

I suspect that part of what makes interacting with autistic family members seem more difficult is constant exposure to unrealistic ideals of what a family is “supposed” to be like. I know that blaming the media is a cliché, but I really do think all these sentiments flying around, like “I’m entitled to my ‘me’ time,” and “I don’t have to put up with somebody who’s not sensitive to my needs,” in addition to the — I’ll say it — *embarrassment* that results from knowing people are thinking, “Wow, she’s really putting up with a lot of crap from that weirdo; that can’t be healthy at all” . . . these are damaging. God intended families to be able to put up with a LOT more than they put up with nowadays before it occurs to them that they’re supposed to see themselves as victims. I understand, perfectly, that when people with completely different brain structures try to detect and fulfill each other’s needs it can be befuddling (i.e., when one feels unloved without a hug and the other can’t stand to be hugged). But it takes effort on the part of everyone in the family—and again, children learn—to compromise. I think that in the case of autistic people our culture too often sends out the message that one shouldn’t HAVE to compromise for THAT kind of person.

One more thing. Though I’m hardly qualified to give general advice about parenting since the only “children” I have are covered in fur, feathers, or scales, I have a sneaking suspicion that there is such a thing as over-researching when it comes to how to show affection to your kid. You’ll see needs, and you’ll fill them the best you can. If you don’t over-pathologize everything, it can happen just as it should.

Evonne - sorry for the delay in reply, I've been thinking it over. And thank you for the welcome!

I realise I did not say that often he would lash out and hit me. I think this was due to some combination of unrealistic expectations of a child's behaviour (he thought I could do what he could do) and what I now recognise as meltdowns, probably exacerbated by the unpredictability and noise generated by children. I had to "walk on eggshells". I know it sounds like I am making excuses, but he is an honest, reliable, trustworthy person. I don't excuse it, but I do think it's an explanation for the puzzle of why someone with no malice in him would do these things.

If I had never heard of AS, and/or if I did not have it myself, then I still would not understand him. So I am glad I know about AS now. As you say, children grow up and understand what their parents were trying to do. I think that, and my new knowledge about AS, is probably my best hope.

"I hope you meet a really cute Aspie, Anon. :)"I tend to be interested in either Aspies, or the male equivalent of the maternal type, IYSWIM.

"Let’s say I reach over and touch my husband when he’s not expecting it. All in one big muddled moment, these things happen:"Oh yeah, that sounds like how our family fights sometimes get started.

I too wonder whether one day my internal simulation of a normal person will break down, or instead become second nature.

"I think that in the case of autistic people our culture too often sends out the message that one shouldn’t HAVE to compromise for THAT kind of person."

Anon, what a wonderful article! Does your dad have a "special interest"? :) He might appreciate you starting from there, periodically sending him stuff related to what he likes. Even if you don't get the outward response you expect, don't assume stuff like that goes unappreciated. And by "stuff" I don't necessarily mean stuff that costs anything; just drawing his attention to news articles or whatever might be a start.

Hi evonne - yes, I have always saved or emailed my father anything related to his interests. I know it is appreciated, I just wish I got more of a response. I guess this is what they call "lack of reciprocation".

I have been reading some other AS blogs, and often mentioned is the difficulty in accepting oneself as AS. I don't know whether to use this new knowledge to try to better fake NTness, or just to give up and give myself a break.

Not affiliated with any academic institutionHas never been a faculty memberHas never received IRB approvalHas never received a GrantHas not published a single research reportHas not been published in any peer-reviewed or research journal